Monday, September 12, 2011

My daughter Savannah and I sat on the grass near where her brother was having soccer practice. She had made a friend, a little sister of a boy on the team, and together they sat and played Barbies in the sunshine. Sitting around us were all the other parents that had come to watch their boys play. In a split second, without warning (as usual) Savannah’s body stiffened and she was thrust forward, head first, into the grass. Instinctively, I did what I had done so many times before. I gently rolled Savannah onto her side and saw what I always saw. Her face was rigid, and the muscles in her lips and eyelids twitched relentlessly. Her arms and legs were completely stiff and at the joints, they jerked violently. She made frothing sounds with her mouth, and blood and saliva rolled down her chin because she had, again, bitten her tongue.

It was just like the other seizures Savannah had everyday. Only this time, she had an audience. And this audience was obviously not a group of people who had ever seen a seizure before. The little girl next to Savannah became afraid. She looked to her mother for guidance, and her mother, who was equally terrified, motioned to her. The girl ran away from Savannah and into her mother’s clutching grasp. The other parents stared at us with their mouths open in bewilderment, and I begin to feel oddly uncomfortable. Seeing their reaction, I put my back to them and shielded Savannah from their glances. When her seizure was over, I scooped her up into my arms; calmly told the onlookers the Savannah had had a seizure, and took her home.

Upon reflection, I became angry – at first I was angry with them. How could they act that way? It wasn’t Savannah’s fault she had seizures. And it’s not like it can’t happen to anybody. But then, I got mad at myself. I realized that I could have used that ugly situation to educate about 15 people, including one impressionable little girl, about epilepsy. And I was sad for the opportunity lost.

Seizures can be ugly - Especially convulsive ones. They scare people. But if we are ever going to erase the myths and misconceptions that exist about epilepsy, we’re going to have to let people see seizures, and then explain to them what they are seeing. If I had it to do over again, I would handle that situation at the park a lot differently. At least now I’m prepared should it happen again . . . or in our case, when it happens again.

Monday, September 5, 2011

So why blog? I don’t really care much for ‘putting myself out there’ to be honest with you. And lord knows I have enough on my plate; that’s for sure. The answer is because I hate epilepsy. Hate it with the fire of a thousand suns (that’s Shakespeare’s in case you require citations). I have nothing nice to say about this awful illness. It is the devil. But hating something is a slippery slope. Once you let hate in, it can spread like a cancer. And before you know it, it’s taken root and made you bitter and miserable. So I feel like I have to work especially hard to not let epilepsy and hate win. I can’t just stop hating epilepsy. Hate it. But I can focus on the positive things in our lives. Like Savannah’s smile. You might say to yourself, but Savannah, you, and your family are who you are because of epilepsy. And I would counter with no; we are this way despite epilepsy. It’s a choice. Our choice. Hence the blog. This is my way of focusing on the positive in our lives and trying to laugh a little in the process. Savannah smiles despite epilepsy. And so will I.

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About Me

I answer to lots of things but 'Mommy' is my favorite. Savannah's my daughter, my muse, and my sunshine. She teaches me everyday to smile, laugh, and love with total abandon. For her, for my family, and for the future Savannahs out there who will develop intractable epilepsy, I have dedicated my life to epilepsy research. We must find a cure. I love you Savannah.

Savannah's Story

As a toddler, Savannah was happy, silly, strong-willed, and full of love. She developed normal until the age of 2 years when she had her first seizure. She had a few seizures and then went 6 months without having any.But at age 3, the seizures came back and with a vengeance.To this day we have no idea why she started having seizures and nothing has worked to control them.

Savannah is now 18 and has had over 25,000 seizures.Epilepsy moved into our lives uninvited, unannounced, and continually attacks that which is most precious to us – our child.But we refuse to wallow.We’ve somehow managed to survive.Somehow I managed to finish school and get a PhD in Neurobiology.Combined with the PhD I’m pretty sure I have in Epilepsy, I somehow manage to do epilepsy research at a great University.We must find a cure for this horror.And we must hurry.

Today, Savannah is still happy, silly, strong-willed, and full of love.She smiles, despite her epilepsy, and teaches others to smile too.This blog is to remind us to never lose hope, never give up, and never let epilepsy take our smile.